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HIFU treatment- what’s involved?

User
Posted 11 Aug 2022 at 15:07

Hi, I’ve been diagnosed and have a Gleason score of 3+4 =7. I’ve been offered all treatments and l’m going for HIFU. I’m 64, very active and have no symptoms or any other illnesses. Has anybody had this treatment and willing to talk me through how they came out the other end?  I’d be really grateful for some  insight into this procedure from someone who has been through it.  Cheers Des

User
Posted 11 Aug 2022 at 18:40

It is becoming more popular which is good because the side effects are minimal.

Old Barry on this profile posts often and has quite a bit of experience with HIFU. Do accept that it is not unusual to require another treatment after a few years.

https://community.prostatecanceruk.org/default.aspx?g=profile&u=2428

 

Dave

User
Posted 12 Aug 2022 at 04:14

Hi DR,

I have had HIFU on two occasions as salvage treatment for failed RT but the procedure would be very similar if you were having it as a primary treatment. It should only be administered if it is believed that the cancer is confined to the Prostate and to where the probe can focus. (Some areas cannot be reached). Furthermore, the objective is to treat only 'significant tumours'. This can help explain why post HIFU PSA may be higher than with RP and RT.

Rarely HIFU is administered under an Epidural but normally under a GA, as was for my case on both occasions. You have to have had a good MRI and pass preop tests before the treatment and a powerful quick acting laxative is given immediately before the HIFU. You then have the GA and come round two hours or thereabouts thereafter. Clearly, the number and size of tumours to be treated will affect the time in a particular case. Very soon after coming round I was eating a sandwich and drinking a cuppa. Bruising was more apparent the day after for a couple of days but I found the catheter very uncomfortable but the situation was 90% better when this was taken out with ease a week later. Passing of urine was back to pre treatment level when the catheter was removed and there was a miniscule amount of blood on the first occasion only. However, my tumour was small and logically one might expect rather more blood and possibly clots with larger/more tumours. I found standing or lying down easier and immediately after my second HIFU I was driven home some 200 miles from UCLH in London. I found it easier to slouch when sitting, as sitting upright put unwanted pressure on the catheter area until this was removed .

I can't comment with regard to ED, as the RT I had years previously brought this about but am aware that HIFU compares favourabl. in this respect.

For men that are suitable for HIFU, it is an easy procedure with mild side effects. It may need repeating (as in my case) but my PSA at 6 months after treatment is 0.02 which is excellent for a man still having a Prostate albeit a radiated one. Where HIFU does not work as hoped for, it can be followed by surgery or a form of RT.

My advice for any man for whom HIFU is considered an option, would be to get a opinion from UCLH who also do Ireversible Electro Poration, often referred to as Nanoknife which may be more suited to some men than HIFU.

This is a little dated now but gives some useful info about HIFU and briefly mentions other types of focal therapy. If you watch it all you can see what goes on while you are under GA. https://www.youtube.com/watch?v=CHchSGAesg8

 

Edited by member 12 Aug 2022 at 04:15  | Reason: to highlight link

Barry
User
Posted 12 Aug 2022 at 10:15

I had partial HIFU (60% of my prostate) in Aug 2017. Very few side effects except dry orgasms and weaker urine flow. However, the PCa has now spread to 6 of my pelvic lymph nodes and I have been on Bicalutamide 50mg pills for 2 weeks and had my first ADT injection (Decapeptyl 3mg 1 month) yesterday. Very few side effects from the pills but too early to tell re. the injection.

My lay advice is that if you're going to have HIFU (and imho it is true that it is has fewer side effects - particualrly sexual and is of course non-invasive) is that you have it to the WHOLE prostate not just partial as I did. 

I was also Gl 7 (3+4) buy it looks like the surgeon left some minor GL 6 in one side of my prostate - and that has now had consequences. Hope this is of some help. Best with your treatment. 

User
Posted 11 Aug 2022 at 19:08

Hi Jim, thanks for your message.  My cancer is 4-6ml and my PSA was 1.9 three years ago and has risen to 3.7 back in May. My brother has Prostate Cancer and therefore I’m told it’s best to have treatment now. I have no symptoms. Hope this helps. Cheers Des

User
Posted 11 Aug 2022 at 19:48

Thank you for replying. It would seem then in my trust at least they consider that there is a limit on the legion size in localised PC which can be successfully treated. Like I say really happy to see that this treatment is being offered. All the very best with your treatment.

Edited by member 11 Aug 2022 at 19:50  | Reason: Not specified

User
Posted 12 Aug 2022 at 07:07

Hi Barry, I’d like to take this opportunity to thank you for taking the time to respond in detail to my message. This is all very new to me and you’ve given me a lot more to think about. I’ve been referred to Charing Cross Hospital and should hopefully hear from them in a few days. I didn’t know anything about Nanoknife and will discuss this with them as it could also be a possibility as my lesion is 4-6ml.  It’s a shame as I had a meeting with an Oncologist on Monday discussing various treatments and if I’d know about this I could have mentioned it. 
I have already watched the HIFU link you mentioned. Yes, it is a bit outdated but very useful.

Thanks once again Barry, I’ll keep in contact. 

Cheers

Des

 

 

User
Posted 12 Aug 2022 at 10:33

Hi Howard, thanks for your message. That information is really useful and something that I’ll definitely take up in my consultation meeting. It’s great to be in contact with people who have been through this. What I’ve learnt over the past couple of months is that Prostate Cancer can be different for everyone and the more we speak about it the better we understand how we can deal with it. 

Thanks again. 

Des

 

User
Posted 12 Aug 2022 at 10:52

Des  I was talking about the self injections for ED, caverject or Invicorp25 etc.

User
Posted 12 Aug 2022 at 14:48
Hi Howard,

Sorry that your PCa has spread to some of your Lymph nodes and you are now being treated systemically, most probably because these are too many and widely dispersed to be dealt with by RT, although you could check that RT has been ruled out. HIFU should not be administered if it is seen to be spread outside the Prostate but it is possible that some unseen micro cancer cells were already in your system even before you had your HIFU and even if this had been fully ablated it would have not changed this. Full Prostate HIFU ablation is not done so much nowadays to help preserve function as much as possible and minimise side effects. A similar situation applies with breast cancer in so far as rather than removing an entire breast, cancerous growths are removed by preference. You might consider asking your consultant why he thinks your cancer has gone to some of your nodes although this is academic.

Barry
User
Posted 11 Oct 2022 at 19:18

Hi Barry, just to let you know I had HIFU treatment on 29 September. I had a catheter in for a week and it was taken out on Friday. I feel very lucky as I have no side effects at all. No erectile dysfunction or incontinence. Everything is as it was before. It’s incredible. I need a PSA test in December and an MRI scan next year September and from then on keeping a regular check on PSAs and MRI scans. Thanks for the information you put on this site, it helped me in making my decision. Thanks again Barry. 
Cheers Des

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User
Posted 11 Aug 2022 at 18:40

It is becoming more popular which is good because the side effects are minimal.

Old Barry on this profile posts often and has quite a bit of experience with HIFU. Do accept that it is not unusual to require another treatment after a few years.

https://community.prostatecanceruk.org/default.aspx?g=profile&u=2428

 

Dave

User
Posted 11 Aug 2022 at 19:03

Just curious. Do you know the size of your legion. HIFU was offered but my 14mm legion was considered too large. Good to hear that is being offered much more widely.

User
Posted 11 Aug 2022 at 19:08

Hi Jim, thanks for your message.  My cancer is 4-6ml and my PSA was 1.9 three years ago and has risen to 3.7 back in May. My brother has Prostate Cancer and therefore I’m told it’s best to have treatment now. I have no symptoms. Hope this helps. Cheers Des

User
Posted 11 Aug 2022 at 19:48

Thank you for replying. It would seem then in my trust at least they consider that there is a limit on the legion size in localised PC which can be successfully treated. Like I say really happy to see that this treatment is being offered. All the very best with your treatment.

Edited by member 11 Aug 2022 at 19:50  | Reason: Not specified

User
Posted 12 Aug 2022 at 04:14

Hi DR,

I have had HIFU on two occasions as salvage treatment for failed RT but the procedure would be very similar if you were having it as a primary treatment. It should only be administered if it is believed that the cancer is confined to the Prostate and to where the probe can focus. (Some areas cannot be reached). Furthermore, the objective is to treat only 'significant tumours'. This can help explain why post HIFU PSA may be higher than with RP and RT.

Rarely HIFU is administered under an Epidural but normally under a GA, as was for my case on both occasions. You have to have had a good MRI and pass preop tests before the treatment and a powerful quick acting laxative is given immediately before the HIFU. You then have the GA and come round two hours or thereabouts thereafter. Clearly, the number and size of tumours to be treated will affect the time in a particular case. Very soon after coming round I was eating a sandwich and drinking a cuppa. Bruising was more apparent the day after for a couple of days but I found the catheter very uncomfortable but the situation was 90% better when this was taken out with ease a week later. Passing of urine was back to pre treatment level when the catheter was removed and there was a miniscule amount of blood on the first occasion only. However, my tumour was small and logically one might expect rather more blood and possibly clots with larger/more tumours. I found standing or lying down easier and immediately after my second HIFU I was driven home some 200 miles from UCLH in London. I found it easier to slouch when sitting, as sitting upright put unwanted pressure on the catheter area until this was removed .

I can't comment with regard to ED, as the RT I had years previously brought this about but am aware that HIFU compares favourabl. in this respect.

For men that are suitable for HIFU, it is an easy procedure with mild side effects. It may need repeating (as in my case) but my PSA at 6 months after treatment is 0.02 which is excellent for a man still having a Prostate albeit a radiated one. Where HIFU does not work as hoped for, it can be followed by surgery or a form of RT.

My advice for any man for whom HIFU is considered an option, would be to get a opinion from UCLH who also do Ireversible Electro Poration, often referred to as Nanoknife which may be more suited to some men than HIFU.

This is a little dated now but gives some useful info about HIFU and briefly mentions other types of focal therapy. If you watch it all you can see what goes on while you are under GA. https://www.youtube.com/watch?v=CHchSGAesg8

 

Edited by member 12 Aug 2022 at 04:15  | Reason: to highlight link

Barry
User
Posted 12 Aug 2022 at 07:07

Hi Barry, I’d like to take this opportunity to thank you for taking the time to respond in detail to my message. This is all very new to me and you’ve given me a lot more to think about. I’ve been referred to Charing Cross Hospital and should hopefully hear from them in a few days. I didn’t know anything about Nanoknife and will discuss this with them as it could also be a possibility as my lesion is 4-6ml.  It’s a shame as I had a meeting with an Oncologist on Monday discussing various treatments and if I’d know about this I could have mentioned it. 
I have already watched the HIFU link you mentioned. Yes, it is a bit outdated but very useful.

Thanks once again Barry, I’ll keep in contact. 

Cheers

Des

 

 

User
Posted 12 Aug 2022 at 09:10
Des, if you go the injection route don't worry about the actual insertion. The hardest part is getting your head around sticking a needle in your penis. The needle is very short and very thin, you barely feel it go in. Then the amount of fluid used is minimal the syringe only moves a couple of millimetres or so.

Cheers

Bill

User
Posted 12 Aug 2022 at 09:21

Hi Bill, thanks for your message. I’m not quite sure what this actually means as I’m told this is done under a general anesthetic. 

Cheers Des

User
Posted 12 Aug 2022 at 10:15

I had partial HIFU (60% of my prostate) in Aug 2017. Very few side effects except dry orgasms and weaker urine flow. However, the PCa has now spread to 6 of my pelvic lymph nodes and I have been on Bicalutamide 50mg pills for 2 weeks and had my first ADT injection (Decapeptyl 3mg 1 month) yesterday. Very few side effects from the pills but too early to tell re. the injection.

My lay advice is that if you're going to have HIFU (and imho it is true that it is has fewer side effects - particualrly sexual and is of course non-invasive) is that you have it to the WHOLE prostate not just partial as I did. 

I was also Gl 7 (3+4) buy it looks like the surgeon left some minor GL 6 in one side of my prostate - and that has now had consequences. Hope this is of some help. Best with your treatment. 

User
Posted 12 Aug 2022 at 10:33

Hi Howard, thanks for your message. That information is really useful and something that I’ll definitely take up in my consultation meeting. It’s great to be in contact with people who have been through this. What I’ve learnt over the past couple of months is that Prostate Cancer can be different for everyone and the more we speak about it the better we understand how we can deal with it. 

Thanks again. 

Des

 

User
Posted 12 Aug 2022 at 10:52

Des  I was talking about the self injections for ED, caverject or Invicorp25 etc.

User
Posted 12 Aug 2022 at 14:48
Hi Howard,

Sorry that your PCa has spread to some of your Lymph nodes and you are now being treated systemically, most probably because these are too many and widely dispersed to be dealt with by RT, although you could check that RT has been ruled out. HIFU should not be administered if it is seen to be spread outside the Prostate but it is possible that some unseen micro cancer cells were already in your system even before you had your HIFU and even if this had been fully ablated it would have not changed this. Full Prostate HIFU ablation is not done so much nowadays to help preserve function as much as possible and minimise side effects. A similar situation applies with breast cancer in so far as rather than removing an entire breast, cancerous growths are removed by preference. You might consider asking your consultant why he thinks your cancer has gone to some of your nodes although this is academic.

Barry
User
Posted 12 Aug 2022 at 15:03

Hi Barry, not sure how this all works as I’m new to it but I can’t see Howard’s question. Not sure if you replied to him. Cheers Des

User
Posted 12 Aug 2022 at 18:24
"Posted 12 Aug 2022 at 10:52

 

Des  I was talking about the self injections for ED, caverject or Invicorp25 etc."

 

Sorry Des the reply was meant for another thread. Don't know how I did that!

I'm not surprised it didn't make sense.

 

I should delete it because it doesnt make sence but will only if you ask. Then if you delete your reply it will all be right.

 

Cheers 

Bill

User
Posted 12 Aug 2022 at 18:27

Bill, no probs. Des 

User
Posted 13 Aug 2022 at 01:38
If you have a problem suggest logging out then in again having refreshed thread but others may deal with this differently.. There are a few quirks with this web site. One of them is that my spell check works fine with Chrome but not using Firefox, although this works everywhere else.
Barry
User
Posted 11 Oct 2022 at 19:18

Hi Barry, just to let you know I had HIFU treatment on 29 September. I had a catheter in for a week and it was taken out on Friday. I feel very lucky as I have no side effects at all. No erectile dysfunction or incontinence. Everything is as it was before. It’s incredible. I need a PSA test in December and an MRI scan next year September and from then on keeping a regular check on PSAs and MRI scans. Thanks for the information you put on this site, it helped me in making my decision. Thanks again Barry. 
Cheers Des

User
Posted 13 Oct 2022 at 05:18
Hi Des,

Good to know your HIFU went well, at least from side effects aspect which seems to be a quite typical result. Of course only time and follow up tests will give an idea of how well it dealt with the cancer and in this respect you are in the same position as those who had Prostatectomy or one of the forms of RT.

Do let us know the results of the follow up tests.

Barry
User
Posted 13 Oct 2022 at 10:02

Hi Barry, thanks for your message. I’ll keep you informed has to how it all goes. Cheers Des

User
Posted 16 Oct 2022 at 09:13

Hi, I read a lot about UCLA as offering HIFU on the NHS, but are there any other NHS hospitals offering it?

User
Posted 16 Oct 2022 at 11:18

Hi, my understanding is that HIFU has been offered on the NHS since January this year. I had my HIFU treatment two weeks ago and was referred from Chelsea and Westminster Hospital to the Charing Cross Hospital. I was diagnosed on 17 July and had treatment on 29 September. I was treated by Professor (doctor's name removed by moderator). Please feel free to contact me if you have any questions.

Cheers Des

Edited by moderator 16 Oct 2022 at 12:48  | Reason: Not specified

User
Posted 20 Oct 2022 at 19:00

I had it at Southampton UHS.

 

User
Posted 20 Oct 2022 at 21:18

Hi Howard, that’s interesting as a guy I met a couple of weeks ago lives in Southampton and had his treatment in London.  I’m assuming that things have changed in recent years. 

Cheers

Des

User
Posted 21 Oct 2022 at 12:52

Originally Posted by: Online Community Member

Hi, I read a lot about UCLA as offering HIFU on the NHS, but are there any other NHS hospitals offering it?

I think you meant UCLH (University College London Hospitals).  In medical terms  UCLA is an acronym for the well known American Hospital, University of California Los Angeles.  I don't think they are treating NHS patients yet but UCLH are LOL. 

Barry
 
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